Stage 4 Esophageal Cancer

Hi Bird Sung,

I am quite calm thank you. I am trying to think about what's best for my family and me. I'm aware that averages are made up of an awful lot of time data and the max. and min. could be quite far apart, they could also be quite close.

I'm not making any decisions yet until I've seen the oncologist and had a full and frank discussion with her, with my wife with me. I'll then decide with my wife what the plan should be. 

The treatment may well work, but I'm then still left with the same average of 6 months having undergone 6 months (at least) of feeling absolutely rubbish with my wife worrying about me all the time.

Anyway, thanks for your views and comments.

Hi

I have read what you have written and feel so sad.  My partner had oesophagal cancer.  He was diagnosed over a year ago and was given false hope that everything would be ok.  The tumour was very small T1N1M0. He had surgery using an endoscope and radiotherapy but it didn't work and his oncologist said the tumour was too small to treat so he would be monitored.  He could not have major surgery owing to emphysema and fibrosis of the lung.  He died 5 weeks ago as his chest was not strong enough to withstand the radiotherapy and he succumbed to pneumonia.  

I had a good chat with his specialist nurse after he died,  as I had so many questions and she told me that there is no way of knowing how long someone will live.  She's known stage 4 patients who live far longer than the average prediction and patients like my partner who do not.  I know you are aware of statistics.  

The oncologist said he could have chemo when he developed symptoms.  My partner decided he would give it a go and stop if it became too much but in the end it never happened as it was his chest that was the problem.  

My very best wishes for whatever you decide.

Thank you ever so much for your comments, I can only imagine that it was a struggle for you to relive it all. 

I must admit I'm tending towards trying the first round of chemo to see how I cope. I just want a reasonable quality of life with my wife and family for whatever time I've got left.

Go for 2nd and third opinion 

Hi 

so sorry to you and your family over your diagnosis. Although you have had some good advice already on here have you joined the incurable group ? These people are so uplifting and prof that some treatments do work my Parnter is incurable and he finds great strength from this group because they know exactly how he feels although he’s not posted on there yet he likes to read other peoples journeys and how they are coming along. He’s told me he’s read on there on many occasions we’re people have been offered palative chemo and then got on a trail because the tumours  have shrunk and living well passed there sell by date has my partner says they put it 

I don’t want to offer you any false hope at all but please join that group and see there stories and ask there advice these people unfortunately and horrendously have all been given the same STAGE 4 prognosis like yourself I hope this helps and you get some great advice of them 

best wishes to you and your family Jane 

Hi Jane .I have just read your post and can't believe how similar it is to our story. My husband is 57 with exactly the same diagnosis, timescale ,treatment and prognosis.  We also received no support and also we had a lot of mistakes and let downs by the medical professionals who are supposed to help us at this horrendous time.  I too feel I have already lost my husband  he's sort of gone somewhere else, its awful. I hope if you need to talk you would contact me as we could support each other with our almost identical situations and it sounds from your post that you are struggling as much as I am. My life has collapsed and its not going to come back  xxxx  Could you tell me how old your dear husband is?   Xx. Please somehow try to stay strong xxxxxx

Hi Auldfarrt

firstly I’m really sorry about your diagnoses. 

I just wanted to say I have witnessed both of my parents go through chemo, both for a stage 4 diagnosis, and the side effects and how the treatment effected each of them were really quite different.

My dear dad, it hit him hard and he felt sick and poorly a lot of the time, but my mum on the other hand had really quite minimal side effects and could really go about her day to day ice with little impact.

I was thinking it may not have to be an all or nothing approach, perhaps a middle ground would be to give chemo a go if you wanted to, and if the side effects are so that it out weighs your quality of life you could decide to stop. Just a suggestion for you. 

Whatever you decide though, I wish you well xx

Thanks Missy 81,

I've my first meeting with the oncologist on Thursday afternoon, and I was just re-reading some of the letters I've had from the various doctors. The type of chemo. is palliative chemotherapy which apparently is designed to easy my remaining time, and possibly extend it. I've come to accept the situation and have decided, along with my wife, that quality of life (what remains of it) is more important than the length of it. 

I may think about one round of chemo. just to see the impact on me, but as I understand things the impact can grow with the more chemo. you have. Another factor coming into play is where I want to die, or indeed where my wife would prefer me to die. Personally I'd rather die at home, that doesn't cause to much upset, than in a hospital ward somewhere.

Sorry to be so frank, but I'm afraid that's currently where I'm at.

I really appreciate you taking the time to write, and I hope your mum and dad are progressing well.

Thanks again.

Hi totally lost

I am so sorry to read about your husband's diagnosis.  I know exactly how you feel.  My partner died 6 weeks ago from complications after radiotherapy.  My life has collapsed too. I know exactly what you mean about being let down by medical professionals.  

My partner had a ct scan in October 17 as he had chest problems.  A dark area showed up on his oesophagus so he was referred to a consultant upper gi surgeon.  My partner had a subtotal oesophagectomy 11 years ago and was told the dark area was from that and probably nothing to worry about.  Arranged endoscopy just as a precaution.  After endoscopy he was told no cancer was present and they'd taken routine biopsies but everything was ok.  The surgeon shook his hand. SIX weeks later he received an urgent letter from the hospital.  A different surgeon broke the news that cancer was present.  It wasn't a recurrence.  It was a primary cancer.  Anyway not to worry as it was only 1cm, had been there a long time and could be treated.  Never had an explanation as to why it took six weeks. The delay meant treatment ran into the Christmas/New year period.  More delay.  He had endoscopal resection surgery followed by radiotherapy TWO MONTHS  later.  Getting to the hospital was horrendous as that was the start of the beast from the east.  Radiotherapy did not get rid of the tumour, despite being told "everything will be fine and not to worry" and "it's just a precaution." Then a different surgeon told us he had a year to live.  The tumour was too small to treat and would be monitored.  It was absolutely horrendous and it was like being punched in the stomach.  I know exactly how you feel.  It's a combination of disbelief, panic, anger and despair.  I wanted to curl into a ball. My partner went into a deep depression and never recovered.  I will never forgive that surgeon.  The specialist nurse was horrified and couldn't understand why he had said that as prognosis is usually given at a later stage if THE PATIENT ASKS. She said everyone is different and even Stage 4 can survive a lot longer than expected. I know now the prognosis was statistical and not based on my partner's personal cancer..  A personal prognosis gave him far more than a year but I can't tell him as he's gone.  The radiotherapy destroyed his weak chest and he caught pneumonia. He only lived 6 months. I wish he'd never had that ct scan.  My partner also said the same.

I am so sorry again for you both.  The only advice I can give you is to ask lots of questions and challenge if necessary.  Write things down.  If things aren't clear or dont make sense then ask.   Ring the specialist nurse with any concerns.  Don't put anything off. 

I send you both my very best wishes. Xxxxx

Hi Aulldfartt,

I am in the horrid situation as yoursel.

Last Tuesday I was told that I will be having a scan in 3 months time with a view to buying me some more time . I have bone mets.

I have struggled for the past week emotionally.

I managed an hours sleep last night, am trying to knock the alcohol on the head, I have been operated on ,(Ivor Lewis last August ) live on my own but I do have kids.

How are you doing emotionally? 

I feel incredibly depressed most of the time at the moment.

Kind regards. 

Pete G